Writer and mum goes in search of the latest knowledge
If there is one thing we know with certainty about autism, it is that we know so very little about autism.
The condition and that huge, gaping hole where specialist knowledge should be is never far from my mind. It hasn’t been since my son’s diagnosis.
That, in itself, took two years of humming and hawing by paediatricians, undecided about whether to diagnose him or not, before it was finally confirmed when he was four. That was seven years ago and, in many ways, his condition makes my son uniquely wonderful – funny, caring, good with words and searingly honest.
Why, then, would we want to change him? If I could wave a magic wand, I’d keep his personality but improve his neural connectivity so he could get his words out quickly, gain better balance and co-ordination and improve his auditory and sensory processing. He could focus on what was being said and learn more easily.
I don’t have a wand though. Instead, I find myself scouring the internet.
I’ll read of some potential therapy and start him on a course of probiotics, vitamins, digestive enzymes, sometimes all three. But it all feels like so many stabs in the dark. As scientists make breakthroughs in the treatment of other conditions, autism stands out for the glaring absence of knowledge around its causes, development, and treatment.
There are many within the autism community – parents, autistic adults, doctors and scientists – who question whether we should even be talking about treatment.
And that’s where the thinking around this condition gets really muddy. Autism is an umbrella term for individuals who have difficulty with communication and social interaction, demonstrate repetitive behaviours and have sensory issues.
But the spectrum is enormous. There are those with autism for whom the condition brings brilliance, they may be intellectually or musically gifted, or have other significantly enhanced abilities.
Then there are those who are profoundly disabled, unable to communicate and seemingly trapped within their bodies. Sometimes an individual can be both gifted and profoundly disabled.
So just where are we as far as our knowledge of the condition is concerned?
To find out, I turned to two experts – one a scientist behind a major recent development, the other someone who has worked in the field of autism for almost 30 years.
The scientist is Dr Naila Rabbani, reader of experimental systems biology at the University of Warwick, who led a recent study resulting in the development of new blood and urine tests that can indicate